Activity and Participation after Spinal Cord Injury: State-of-the-Art Report

By Ullrich, Philip M.; Spungen, Ann M. et al. | Journal of Rehabilitation Research & Development, January-February 2012 | Go to article overview

Activity and Participation after Spinal Cord Injury: State-of-the-Art Report


Ullrich, Philip M., Spungen, Ann M., Atkinson, Darryn, Bombardier, Charles H., Chen, Yuying, Erosa, Norma A., Groer, Shirley, Ottomanelli, Lisa, Tulsky, David S., Journal of Rehabilitation Research & Development


INTRODUCTION

Prior to World War II (WWII), persons who sustained a spinal cord injury (SCI) could expect to survive only weeks, and even if the odds of survival had been in their favor, no rehabilitative care was available that would have allowed them to pursue ordinary life aims [1]. Owing to advances in emergency medicine, antibiotics, and other aspects of acute medical care, thousands of veterans who sustained an SCI in the conflicts of WWII were able to return home. The survival of these individuals prompted the Department of Veterans Affairs (VA) to develop the first specialized care centers dedicated to SCI in the United States, broadening the aims of care for persons with disabilities to include comprehensive restoration of their functional potential in physical, social, vocational, emotional, and recreational areas of life [2]. By the closing years of WWII, three dedicated SCI care centers were opened by the VA. Today, the VA Spinal Cord Injury and Disorders system of care (SCSC) has expanded to 24 SCI care centers that administer specialized care to approximately 17,000 veterans with spinal cord injuries and disorders (SCI/D), making the VA the largest single provider of SCI/D care in the world [3]. In contemporary times, the lifespan of a veteran with SCI/D can be measured in decades. As a result, the attention of clinicians, researchers, and veterans with SCI/D is increasingly turned toward understanding and optimizing psychosocial functioning, such as activity levels and community participation.

Veterans with SCI/D comprise a distinct population deserving additional attention in research and clinical settings for several reasons. The average age of veterans with SCI/D is 55 years, approximately 18 years older than that of their counterparts in the SCI Model Systems. Little is understood about outcomes among older persons with SCI/D. Nearly half of all veterans with SCI/D served by the VA have injuries of nontraumatic etiology; little empirical literature characterizes the psychosocial concerns of persons with nontraumatic SCI/D. Veterans also tend to have lower socioeconomic status and more comorbid medical conditions than the general population, suggesting they may be at increased risk for lower levels of functioning.

As lifespans lengthen among veterans with SCI/D, there is increasing awareness of issues related to aging with SCI/D and a growing need to focus resources on understanding how to assess and address lapses in activity levels and community participation in this population. VA SCSC is extensive and comprehensive and has been in development for more than 65 years, and yet, there is only a limited body of empirical knowledge about veterans with SCI/D that could inform care providers or veterans about important outcomes. Most of what we know about SCI/D comes from research that does not involve veterans, and little of that research has involved populations that are even comparable to veterans on demographic and medical factors (e.g., older age, non-traumatic injuries). As just noted, veterans with SCI/D are different from other populations in important ways, and whether research involving nonveterans with SCI/D will generalize is unknown.

A clear need exists for empirical research aimed at gaining a better understanding of activities, participation, and other outcomes among veterans with SCI/D. Future research among veterans with SCI/D could benefit from a synthesis of expert opinion on the measurement of activities and participation and recommendations for research. Against this general background, this report describes findings of the SCI Workgroup from the State-of-the-Art (SOTA) Conference on Outcome Measures in Rehabilitation, sponsored by the VA Rehabilitation Research and Development (RR&D) Service.

SPINAL CORD INJURY WORKGROUP METHODS

A group of researchers and clinicians in the field of SCI rehabilitation was selected by the SOTA organizers and invited to participate in a 2-day workgroup. …

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